Below is a summary of upcoming meeting and events for the 2015-16 school year. Unless otherwise indicated, events will be in the St. Louis area. Where available, follow the provided links for more information.

Oct.1: 7:00-8:30 Back To School Night, Destiny Church(basement), 1809 Des Peres Rd. 63131 Jackie Schechter(Washington University Senior) and Kurtis & Courtney Matzkind(Kurtis is a high school teacher w/TS) talk about their experiences growing up with TS and navigating successfully through school, jobs, and relationships.

Lynn Dunlap(Special Education teacher and School Psychological Examiner) will also be available for questions, and a book review on current literature pertaining to TS.

Parents, Teachers, and Students are welcome. Teacher information packets will be available for you to take to your child’s school.

January 22nd – Chesterfield Sports Fusion, 5:00 -8:00 pm

On Friday, January 22nd, the Missouri Chapter of the Tourette

Association will be sponsoring a FREE EVENT at Chesterfield Sports Fusion. CSF offers mini-golf, dodgeball, laser tag, a climbing wall, a variety of video games and more.
The Tourette Association will sponsor up to two children per family with an Attraction Sampler Pack that evening. We will also have a party room from 5 – 6 PM with pizza and drinks.

Due to the space and size requirements, we are requiring reservations by January 6th. Please rsvp or direct questions to Diana Guise [636-938-3858 or StLGuises@yahoo.com] or the Missouri Chapter email address: MissouriTSA@yahoo.com.

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Please take 3-4 minutes and help students and adults who have Tourette Syndrome. By clicking the links below, you will be provided with an easy, and quick method to automatically send an important email to your representations regarding education issues and funding for TS research. Additionally, this will result in awareness that TS is an important disorder that impacts thousands of their constituents and which requires their continued support. Following are brief summaries and links.

Ø Education

Students who are bright and have diagnoses that interfere with their education are being denied necessary services.

Manifestation Determination protection MUST NOT be removed from IDEA. This protects students with disabilities from being suspended for symptoms. For additional information regarding protections provided by manifestation determination, read Letter of the Month that is at the top of TS website Education Page. http://tsa-usa.org/Education/education_main.htm

Require that College Education Majors and teachers who are re-certifying receive information regarding TS

Washington University Movement Disorders clinic specialists: Dr. Kevin Black & Dr. Sheel Pathak, Neurologist. The doctors are leading neurologists in the area with extensive TS experience. They are knowledgeable in the current treatments, therapies, and medications for children and families.

Patti Dean, Special School District for the Rockwood district. As an SSD teacher, Patti can address questions related to the best ways to help your children and work with teachers.

A TS-related study is being conducted by doctors at the Washington University School of Medicine.

Dr. Kevin Black is conducting a study with children between the ages of five and 12 who are experiencing a recent onset (within the past six months) of “tics” — repetitive, involuntary sounds or movements such as eye blinking, sniffing, abdominal tensing, or making small noises.

The purpose of this study is to compare children who go on to develop Tourette Syndrome (TS) with those who do not. The study considers children ages five to 12 and defines “recent onset” as occurring within the past six months.

Requirements include three visits over approximately 12 months, questionnaires, assessments, interviews, genetic testing (saliva sample), and MRI scans. Volunteers will be compensated up to $310 for time and effort.

Parental permission is required. For more information, contact the study coordinator, Emily, at 314-362-2083 or bihune@npg.wustl.edu.

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Calling all teens with TS entering grades 9 through 12: Apply today to attend the NJCTS Tim Howard Leadership Academy at Rutgers University August 6 – 9, 2015. Take advantage of this opportunity to interact with doctors and experts in TS and associated disorders, to gain an improved sense of yourself as a leader and advocate, and to engage in a variety of unforgettable social activities with other teens diagnosed with TS. Visit theNJCTS Tim Howard Leadership Academy website for more information and to access the online application!

Here’s what some of last year’s attendees had to say about their experience at the Academy:

“The academy has helped me realize that my voice and opinion matter and that I shouldn’t be afraid to share it. I know that I am strong, resilient, and a self-leader. I’ve made so many friends who helped to teach me these things as well.”

“I understand so much more about the brain and how it works, as well as Tourette’s. I acquired new skills that will help me through my life, like organizing myself and how to advocate.”

“This was the safest and most accepting place I have ever been in. We got to know each other well enough that we were able to safely and respectfully joke with one another.”

If you have questions about the Academy or the application process, call us today at 908-575-7350. Don’t miss out on this truly spectacular opportunity!

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The deadline to RSVP for the Susan Conners event has been extended to Nov. 6th, so if you have not sent in your RSVP yet, you still have time! Please be sure to RSVP to Lynn Dunlap at Lmchd52@gmail.com.

Here is more information about the event:

On Saturday, Nov.8th – Susan Conners, retired middle school teacher w/TS, and nationally acclaimed speaker/author, will present Tourette Syndrome and Associated Disorders in the Classroom. She will feature her newest book, The Tourette Syndrome & OCD Checklist: A Practical Reference for Parents and Teachers and present.

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On Saturday, Nov.8th – Susan Conners, retired middle school teacher w/TS, and nationally acclaimed speaker/author, will present Tourette Syndrome and Associated Disorders in the Classroom. She will feature her newest book, The Tourette Syndrome & OCD Checklist: A Practical Reference for Parents and Teachers and present. Copies of the books, as well Tourette Syndrome wristbands and medical ID cards will be available. Children are welcome. Attendance is Free. RSVP to Lynn Dunlap at Lmchd52@gmail.com by November 1st.

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Thurs., Sept. 25th – Back-to-School Night 7-9p.m. Destiny Church (basement gym, around back of building) 1809 Des Peres Rd(off Manchester & 270). Jen Stenger, Ill. teacher w/TS and author of The Life That Chose Us, describing life as a teacher with TS. Handouts pertaining to the start of the school year will be available. Children are welcome. Please feel free to invite your child’s teacher.

Sat., Nov.8th – Drury Inn(Olive & 270) 9a.m.-12p.m., breakfast provided. Susan Conners, retired middle school teacher w/TS, and nationally acclaimed speaker/author, will feature her newest book, The Tourette Syndrome & OCD Checklist: A Practical Reference for Parents and Teachers. Copies of the books, as well Tourette Syndrome wristbands and medical ID cards will be available. Children are welcome. Attendance is Free. RSVP to Lynn Dunlap at Lmchd52@gmail.com by November 1st.

February – Children’s Activity To Be Determined, and announced at a later date. If you are interested in such an activity and have suggestions as to what you might like, please email us about that.

April – Date to be announced(Thursday night),7-9 p.m. “Ask the Dr./Pharmacist/Teacher” Panel. Destiny Church

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On Wednesday, August 20, 2014 (9-5 Est) Give a Collective and Powerful Voice to the Collaborative Academic Research Efforts for Tourette Syndrome Act (H.R. 4221/S.637).

H.R. 4221 / S. 637, also known as the CARE Act continues to gain momentum in Congress. Senator Charles Schumer, the third-ranking Senate Democrat and Chairman of the Senate Rules Committee recently became a cosponsor in order to show support for his constituents living with Tourette Syndrome. His support, plus the addition of 16 Congressmen as cosponsors as of the end of July are a sign of the growing support for TS research on Capitol Hill.

The CARE Act would:
Expand, intensify, and coordinate the National Institute of Health (NIH) programs and activities regarding scientific research on Tourette Syndrome.
Establish 4-6 Collaborative TS Research Centers.
Collect data on the prevalence, and impact of Tourette Syndrome in the US and the availability of medical and social services for individuals and families with Tourette Syndrome
Co-Sponsorship of H.R. 4221 / S. 637 is a crucial step in passing this bill into law.
Talk Now With Your US Congress Representatives, and let us know how it went! Email: elridge.proctor@tsa-usa.org

CALL ACTION ALERT:
On Wednesday, August 20th Call your US House Representatives and US Senators to voice your support. Enlist the help of your friends and family. Ask them to reach out to their elected officials to communicate how important support for the CARE Act is to you.
Log onto TSA’s Public Policy Action Center between 9 am and 5pm EST to be connected to your US House Representative and Senators.http://cqrcengage.com/tsa/app/make-a-call?19&engagementId=56376

Call Message:
Hello, my name is (give your name) and I am calling from (City and State). Is your Healthcare Legislative Assistant available?
(Wait to be transferred. If not, continue with message.)
I would like to ask my (Representative/Senator) to Co-sponsor HR. 4221 / S. 637, the Collaborative Research Efforts for Tourette Syndrome (CARE) Act. This bill is critical for research into finding a cure for Tourette Syndrome to help individuals like me and all Americans living with Tourette Syndrome.
Thank you for relaying my message. End Call!

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About us

The Greater Missouri Chapter of the Tourette Syndrome Association (TSA) serves individuals and families in the St. Louis and Kansas City metropolitan areas and beyond. In concert with the national TSA, we provide information about Tourette Syndrome (TS) and the resources available to help affected families throughout our service area. Our chapter is an all-volunteer, 501c3 agency. We welcome the participation of anyone interested in Tourette Syndrome.

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